LIttle bit of everything rolled into one post!

I had to open the post with this pic.  This is the result of one exhausted mommy after spending 6 hours at the University hospitals in appointments.  I was brain dead and gave Landri a marker and paper in her carseat....a couple minutes later I take a peek back and she had ripped out the felt part out of the marker and was applying it like lipstick...........here is the result after I took the felt piece away for fear she would choke.

It has been forever since my last post!  I'll try to get semi caught up!  I can't belive we are already halfway into the summer!  I am loving the summer with the girls!  Halle has been busy with softball and cheer.....and had her 6th dance recital!  I need to get pics of recital up.  She did so great!  Dance comes easy for her so I rarely see her get nervous, but she was so cute and nervous this year!  She did Hip Hop, Jazz, Tap, Poms, and Father Daughter.....she did the worm in her Hip Hop dance.  Majorly cute if I do say myself.  However....this was the first year that Halle did all of her own outfit changes during recital and totally did it the whole day on her own.  I can't believe how fast she is growing up...sniff. We also went to the Justin Bieber concert....totally fun!  Halle rocked out and waited in line before and after the concer to try to get a glimpse of him.  Sooooo fun! She was totally in her element. She came home and made a list of the next 5 concerts that she wants to go to. 

Landri has been doing so good with speech!  She says quite a few words now.  I had this vision that I would be so good at documenting each word she says and when like some of my blog idols, but so far I have flunked at that.  She says mama, Halle, woof woof, cold, hi, bye, up, more, pop, bottle, baby, ball...there are quite a few more!  Her favorite word by far is Halle.....her BFF.  She understands more than I even know I'm sure of it!  OH!...and she "sings" Ring Around the Rosey.  Sooo cute! I keep meaning to get it on video.  She loves music!  She is such a little entertainer and so much fun!  I love getting to learn more about her and watch her personality grow.  I can't believe how far we have come......I finally feel like I'm getting to a point where I can "chill" a bit and take a deep deep breath and remember to enjoy every moment of her growing up without being obsessed with dr appts and major decisions.  However, as all my other CI mommy idols know you are ALWAYS working to help your child be the best little listener they can be....it just starts to get a bit more "natural"....a way of life.  We did have a bump in the road with Landri's last mapping session. Landri started looking like she was in pain....like frozen in place with her eyes shut...when we put her right CI on even on volume 1 and sensitivity 0.  It freaked me out!  I now realize why we had some of the bumps in the CI journey early on that we had....to practice my advocacy skills. I felt like I wasn't being taken very seriously with my concerns by our center at first, but finally feel like we were heard and they got her back in for another mapping session and now things seem to be back on track. yeah!  We also got another audiogram on Landri and she tested between 20-25 dbs which I think is fab.  She did so good in the booth this time!  We also got our rechargeable batteries from Cochlear!  They are awesome!  We have already tried them out at the indoor waterpark and they worked great!  I feel so lucky that Landri can hear while she plays in water!  We clipped the battery packs to the top of her shoulders since Landri uses the Lite Wear option.  She ran thru lots of spraying water and also waded in water right up to her shoulders and got them soaking wet actually.  They still work as good as new!  I can't really think of a water activity that she couldn't do with her CIs on at this age since she never puts her whole head under.  She splashes and dips her face in the water and gets her head soaked, but that all seems to be fine!  Woooo hoooo!  Here are some pics of the girls....enjoying the blessings of sisterhood.  Love my girls. :-)

Landri's Right Ear Activation and Summer Fun!

Landri's Cochlear Implant in her right ear was activated last week and she now has bilateral hearing!  It was a long day of appointments (scheduled for 6 hours) but we made it thru it!  Landri had little reaction to the sound in her right ear.  Just like the left side they start out with a very soft program to let her brain adjust to the new sound gradually.  Also just like we did with her left side the sound that Landri received will be random noise at first until her  brain starts to interpret what it is hearing so gradually turning up the program will allow the right ear time to catch up without completely distorting the sound she is hearing from the left side.  Clear as mud? :-)  When Landri first got her equipment for the right side she was pulling it off every second.....I was so freaking that we were going to have to go thru the same process we did on the left side of putting the processor back on every second that she took it off. BUT...thankfully that only lasted about 3 hours and she now loves her new processor and is leaving it on alllll the time!  I am thrilled!  Her Audiologist sent us home with 8 programs to work thru (each one gradually louder) and we are on the 4th one.  We go back in 2 weeks to get another set of 8 to work thru.  We also have really gotten into a fabulous groove with her speech services.  Landri's TOD has really helped advocate for Landri and always comes with fun new games.  And we found a fabulous AVT about an hour and a half away that is the best fit for our family ever! Couldn't be more thrilled with the team (family) that we are building around Landri.  Of course, I always leave every speech session feeling like we are not doing enough. Since we chose an AVT communication method for Landri the whole program is parent focused......teaching and educating us to carry out the methods and lessons daily in our home.  Having weekly speech visits is similar to having a personal trainer to workout.....they keep you focused and honest. :-)  Landri is understanding many more words...she has learned "hands", is localizing sound much better, and has added the word "up" to her vocabulary.  Her babbling has increased so much.....she talks to herself, reads herself stories....and my all time fave.....tells the dogs "mo, mo, mo"! :-)  Lovin it!  She also understands some simple commands like.....take the ball to Mommy.....where are your shoes?.....etc.  It is IFSP goal time for Landri. We will have those set next week when we meet with her team to hammer them out. I will post them once we have them finalized and then track her progress towards the goals on the blog.

And.....a little update on what else we have been up to!  We put a pool in the backyard so now our yard is trampoline and pool.  Already we have gotten so much use out of it.  Halle has a "No more school.....see ya at Halle's pool" party planned for the last day of school.......which gets me a bit teary eyed....4th grade already????? No way!  We also went to South Dakota over Memorial weekend to celebrate Greg's parent's 40th wedding anniversary and had a great time!  Here's pics of the kids enjoying the 6 hour car ride! 

Halle has been busy with softball (first game tonight!), dance (recital in 2 weeks), and cheer (3 days a week).  She is ready for summer to start, but already starting to miss her 3rd grade teacher.  We love her.  Greg also stained our deck!  Here's a pic of Landri eating chips and dip while watching Daddy work hard thru the window. 

What a good assistant she is!  And.....some more pictures....enjoy!

HELLOOOOO SUMMER!

The power of CI teens making a difference!!!

Be prepared to be amazed, humbled, and entertained.  Sometimes I get so focused on ALL we have to learn daily about audiograms, MAPings, speech, listening, auditory verbal therapy, ling sounds, trouble shooting CIs etc that it can be easy to forget that how Landri hears is a "lifetime commitment".  I get so focused on helping her meet our daily and monthly goals that it can be easy to think...once she is listening and speaking then...that's it!  I sort of forget that Landri will have a lifetime to educate people on how she is different/special :-) and that someday she will advocate for herself on issues that are important to her......likely hearing related and not!  Thank goodness for fabulous role models like the teens in this video.  Seriously!  It is amazing that just years ago CIs were thought to just help people hear a car coming to know to get out of the street or to hear a smoke alarm.  Now kids are singing, enjoying music, and changing perceptions.  Please take 5 minutes to watch the amazing work of these kids and spread the word!  Landri's future is bright!

Here's the video link!!
Amazing video of CI teens making a difference

A hearing pocket!?

Landri's right ear will be "activated" one week from today!  This is where the audiologists program and hook up the external pieces that Landri will wear on her right ear.....same set up as on the left.   I am so excited to see if Landri has a reaction.  She didn't do much when she heard sound in her left ear for the first time, but now that sound has meaning to her I am anxious to see how she receives her new surround sound.  I am for sure that Landri is wondering what her right ear is for.  She has decided to use it as a pocket. :-)  Ya know how most kids Landri's age put everything in their mouths......Landri tries to put everything in her right ear.....never her left.  When she walks around outside she is always trying to put rocks in her right ear....she sat on the deck for about 20 minutes today trying out different rocks that Halle had found in her ear.  We have had to pull the car over because she got a cheerio wedged in there and thankfully we were able to get it out.  She tries to put straws in her ears, wood chips, food.......all her most favorite treasures.  I think she wonders what that thing is for.  I can't wait for her to realize that we will now use that ear to hear!  A hearing pocket......what a good use! 

We've been busy!!!

I've been wanting to get a post up getting caught up on all of Halle's activities!  She has been busy with school, soccer, softball, dance, and cheer!  She joined a singing group at her school and they had a performace a few months ago.  I was thrilled to get her in a little dress so here are some of my fave pics from the night!  I was super proud of her because their practices were before school and she never complained once about getting up early.  She has a FAB music teacher that does a great job with the kids! 

She is just starting softball so I will get more pics up of that once the season gets going.  She has dress rehearsal for dance this week!  Halle is in 5 dances at recital so it is a miracle if we make it to recital in June with all outfits intact!  She loves dance this year....loves it!  She moved up a couple of levels this year and is challenged more. She loves it!  She is one of the youngest ones in her classes....if not the youngest...but I think that has been good for her.  She does all of her classes on Tuesday nights and we get a 45 minute break in the middle where we get dinner with other moms and dots. I look forward to Tuesdays and spending time with her. She is growing up before my eyes.  She recently had cheer tryouts and placements. 

 Halle was thrilled to find out she moved up into the Junior division. She is so excited!  She gets to travel to more competitions this year......I nearly went into cardiac arrest reading the financial requirements, but we will get thru it!  I am really proud of her. She works really hard going to extra tumbling classes and open gyms to work on her skills.  She really loves it and I love to see her hard work pay off.  Cheer is a hardcore sport these days!  Those girls have to work so hard and be so athletic. We also took a trip to Mall of America and American Girl Doll Store. We had such a great time! 

It was so nice to get away. We met Greg's fam there and his Aunt and Uncle and cousin.  It was so nice!  We also had several people come up to us sharing their Cochlear Implant stories/connections....or asking us about what Landri's CI was. It was the first time since she has had her CI that we have traveled to a larger city and I couldn't believe how many great families we met thru starting conversations about Landris' CI.  I can't believe Halle is almost done with 3rd grade.....seriously?  It has been such a great year for her I wish I could freeze time.  She is growing too fast.  :-)

Children with Cochlear Implants Achieve Similar Educational and Employment Levels as Their Peers!

PS - until I can figure out how to flip my pics again....please tilt your head. ;-)  love this sister pic

Of course, I never doubt for a second that Landri won't be able to achieve any goal that she sets for herself...but it is always comforting to read studies like this to confirm it.  Also, reassuring to see that the communication method that we have chosen for her got rocking results.  A little sense of comfort on this faith filled journey!  follow the link!!

http://www.sciencedaily.com/releases/2010/04/100419162300.htm

Landri - 4 months of hearing!

Landri has been chatting up a storm!  I feel like we are finally starting to get in a groove with speech as we finally have a fab team in place!  Landri has 3 speech sessions a week between what she is offered thru the state and private speech services that we obtained via teletherapy (webcam sessions) and driving to the Quad Cities.  She says "hi" all the time now with purpose...very clearly!  She says "mom"...it's funny...it is rarely a "mama' just a clear, short "mom".  She has a lot of intonation in her voice which makes me happy!!  She makes several sounds for animals and vehicles. Receptively she is understanding more each day!  We are pumping language into her as much as we can and have committed to doing more singing and music play.  Boy...it is so wonderful to have her progressing, but seriously it is HARD work!  It is a HUGE commitment and overwhelming at times.  Of course, you never feel like you are doing enough therapy hours or tracking her progress well enough.  Every CI parent reading....take a second and give yourself a bit pat on the back!  I read on another blog recently that during the next 4 or 5 critical language years you have to let go of the fact that your house may be messier, you may not be at every social gathering with friends, your family may gain a few pounds from eating out so much.....but your deaf child will listen and speak!!!  We have started to condition Landri for her next soundbooth test. She holds a ring up to her ear and then when she hears the sound we have her put it on the peg.  It is seriously super cute to watch her hold that little ring next to her ear smiling and waiting for sound.  We also play music and dance then turn it off and "Listen...I don't hear anything...where did the sound go?".  :-)  Of course it is to Justin Bieber because Halle has Bieber Fever (tears in her eyes when we finally got thru to Ticketmaster for concert tix),  but that just makes our therapy unique to our fam. :-)  Landri hears just about everything I am sure of it! We met with her surgeon last week about completing her right ear....long story...stay tuned. Tentative surgery date to complete that ear is April 23rd. What a journey!  Here are some long over due pics!  As those of you that know me you won't be surprised...I was having a problem getting my pics to rotate so I was limited to those already right side up!  :-)  Will figure it out and get more pictures posted soon!

Jervell Lange Nielsen Syndrome - we have a diagnosis!

So sorry that my blog has been so abandoned.  :-) We have been very busy!  I will try to cram everything in that has happened in about 3 posts - get some caffeine!  As I have briefly shared on the blog in Landri's second CI surgery they discovered a heart condition called Long QT and put her on a beta blocker 3 times a day to help prevent her heart from going into a funky rhythm.  A super quick side story - we were able to discover this from a VERY determined nurse in Post Op that is really an angel to us. Anesthesiology told us it was nothing to worry about, but thanks to a very savvy and determined nurse that pulled us aside and told us that "if it were her child" she would have a Cardiologist see Landri yet that day since we had to spend the night from surgery and told us that even though the Dr. didn't recommend it that we as parents had the right to request it.  I only share this because I think it is always good to remind moms everywhere to trust your mommy instincts and advocate for your kids!  This 5 minute conversation from this very special nurse likely saved Landri's life......seriously...and possibly other lives in our family.  Following that day Landri and our family (the heart condition is genetic) went thru a series of tests.  Landri's have been completed and we are still waiting on some results from Greg's and mine.  Landri's came back that she has Jervell Lange Nielsen Syndrome which is a condition that combines deafness and Long QT Syndrome.  JLNS effects the potassium channels in Landri's body which are needed for hearing and a normal heartbeat.  The odds of having JLNS are about 1 in a million....literally.  We always knew Landri was special.  Please follow this link to learn more about Long QT  www.nhlbi.nih.gov/health/dci/Diseases/qt/qt_whatis.html     With JLNS you have two mutated genes of Long QT 1.  Since Landri has two mutated genes versus the typical one mutated gene associated with most Long QT patients she is at higher risk for an episode (fainting, seizure, sudden death).  Because of this her Cardiologist at the University of Iowa, Dr. Atkins whom we love, recommended that Landri have a unique procedure called a left sympathectomy (there is a more detailed name for the procedure, but the exact name escapes me).  :-)  Since they had never performed this procedure at the University of Iowa (I told you this is a RARE condition!)  we agreed that the surgery should be performed at the Mayo Clinic under the care of Dr. Ackerman and Dr. Moir, whom we also totally love!  They had done the procedure about 17 times on children.  We spent 5 days up at Mayo and Landri came thru the surgery like a champ!!  Basically they removed 4 nerve centers on Landri's left side that cause your body to sweat, feel anxious, heart to raise, etc when under stress or very emotional in the hopes of preventing Landri's heart from going into an unrecoverable funky rhythm.  Dr. Moir did a fabulous job.  This is a very precise procedure and Landri was in great hands!  There is a common side effect with the procedure of a droopy eyelid and thanks to Dr. Moir Landri still has a perfect lid! :-)  Since Landri had the procedure she no longer sweats on the left side of her body...ever.  That took a bit getting used to.  One hand is always clammy and the other is always dry.  When she sweats at nap time there is this distinct line down the back of her head....one side drenched in sweat and the other bone dry.  :-)  Small trade off to keep her safer and will likely be a cool trick at college parties some day.  Landri still needs to be on the beta blockers 3 times a day and she will be on them for life.  They will do an EKG on Landri about every 6 months and then as long as she remains episode free we are on cruise control until Landri gets bigger and closer to puberty which is the highest risk time for her.  At that time her Cardiologist here and her Cardiologist at Mayo will decide if she will need an Implantable Defribillator to reduce her odds even more of having a sudden death episode.  We will cross that bridge when we get there!  Here is a link about Jervell Lange Nielsen Syndrome......the stats are scary....again...the nurse in Post Op was an ANGEL!  http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=jln  Quickly....on the rest of the fam....Greg's EKG was normal but he is still a carrier of the Long QT gene in order for Landri to have JLNS....my EKG was similar to Landri's and they put me on beta blockers as well....Halle's EKG was normal....praise God.  Still waiting for more test results and will then continue to dig into both sides of our families to determine whom else is at risk.  Thanks to everyone for their support and for those that donated to Halle's Jump Rope for Heart!  She raised $642 for the American Heart Association and we could not be more proud. 
 

Rights of Deaf and Hard of Hearing Children in Iowa

Below is a link explaining a bill that has been presented in Iowa!  Read more to hear about the Bill of Rights that that will hopefully be passed in our state.  Honestly......I am amazed that it has to be in writing that just because Landri is deaf that she is entitled to lunch and recess at school.  Seriously? Follow the link below to read more!

http://coolice.legis.state.ia.us/Cool-ICE/default.asp?Category=billinfo&Service=Billbook&menu=false&ga=83&hbill=SF2342

"Landri....Landri....I hear that!"

So much to update I am going to have to break it down into mini-posts!  Since my last post on Landri's journey to learn to listen she had another mapping appointment!  We were especially excited for this one as we were told that Landri would be put in the sound booth and that they would try to get an audiogram out of her. In the 4 weeks between appointments they had a policy change and no longer do sound booth testing until one year post activation.  However, after a little convincing they agreed to put her in the booth with the time we had left at the end of her mapping session.  What a different world it is to be in the booth with her knowing that she can hear!  Prior to her receiving her cochlear implant they did booth testing on Landri both with and without her hearing aides and she never responded to a thing....zilch.  As many hearing tests as your child has when they have a hearing loss you think that you would get used to those tests, but honestly sitting there watching your child completely oblivious to the sound around them never got one ounce easier.....always hard to watch even when you already knew she had no hearing.  Sooooo...fast forward to NOW when we know she has sound and we were SO jazzed to get in there!  They start by trying to condition Landri to look at a box with a blinking Big Bird in it everytime she hears a sound. We had a fabulous Audi, Kenny,  in the booth with us that did so great entertaining Landri and keeping her interest.  The first round was to gauge Landri's reaction to sound they plug into the booth.  Landri "ignored....we hope" a lot of it.  The results on this test indicated a clear response between 40-55 dbs across the different frequencies....our goal was somewhere around 25 dbs. They then tested Landri on speech sounds...the 6 Ling sounds we have been practicing at home.....she did a bit better...between 35-50dbs.  Of course...I am like..."what the heck?"!  But, the Audis reassured me that it is common for a little one as young as Landri to ignore many sounds their first time in the booth.  I am not overly concerned because I feel like Landri is reacting well to sound at home.  Of course, the opportunities in this journey to second guess yourself, wonder if you are doing something wrong, or to worry you are missing something, simply never end.  In the back of my head I wonder if we haven't done a good enough job conditioning Landri to react to the softer sounds?  Seriously I feel like we work so hard, but there are always things that fall thru the cracks.  I mean maybe we got tooo caught up in always saying "vroooom" for a car, always saying "up, up, up, up", always saying, "Mommy open the microwave, mommy close the microwave, oh..Landri's hungry!, let's listen for the beeps!"...I know my CI mommies can relate....that maybe we haven't pointed out and reinforced softer sounds enough?  To calm my mommy nerves we are now doing all the things we have been doing PLUS sprinkling in activities that really CELEBRATE softer sounds!  Wooo hooo!  The weird looks from other people at the Mc Ds playcenter when we clap and celebrate every sound that we hear in there is becoming old news!  Our family loves sound! :-)  Although....Halle could do with a bit less "excitement" about sound when we are in public at times. :-)  So...any other CI mommies that read our blog...should I be concerned about Landri's first booth results?  If your answer is "yes" you are worried, please send a bottle of wine in advance of your post.  :-)

When I started this blog I wanted to be so awesome at updating every new thing Landri heard and understood...but that is just so hard....so here is our update thus far!  I am sure she is trying to communicate more and likely understanding more, but so far I only put it on the list if I am for sure, for sure....for sure.

MILESTONES

Receptive - Landri understands these words with no visual cues

Dog

Baby

Cow

Halle

Bye Bye (although so hard to tell if this is situational)

Where

Landri

She also associates the following sounds with the right item

"Ahhhhh" for airplane

"Mooooo" for cow

"OooooOoooo" for firetruck

Expressive

Landri isn't "saying" any words yet so this is hard for me to figure out how to track. So here it is.  She will pick up the airplane on her own and say "ahhhhhhh". She will play with her cars and say "rrrrrrrrrr" for "vroom vroom".  She will say "mmmmm" for "moooo" when she plays with a cow.  She also says "mmmmm" when she plays with her ice cream cone or when feeding her baby (like "mmmmm good/yummy". All of a sudden we are noticing that she is making so many new sounds and varying her pitch. Everything is "sing songy" vs mono tone.  I am confident that she is "saying" other things I just need to figure it all out.  I mean clearly she is genius. :-)  She has been playing around a lot more with her facial expressions....blowing raspberries a lot again, opening her mouth big and wide.  I am taking these as all good signs that we are moving in the right direction toward communication!

Wow...it feels good to write this all down!  Also to get it in her blog...we consistently see her react to all Ling sounds except "eeeee"...but she tested the best on this sound in the booth.....go figure! 

Halle turns 9 - by mom

Where does the time go?  Seriously.  I can not believe that Halle is 9.  It all goes so fast!  I feel like everytime I blink she is bigger.  I love every age with her, however I have to admit that I really loved it when she wanted to spend all her time with mom. :-) 

What I have learned about Halle so far...

• She has a huge heart
• She is always concerned about others' feelings
• She is a caretaker
• She is very expressive
• She is very dramatic
• She is great at imitating other voices and accents
• She is a performer
• She loves to be on a stage
• She is a great dancer
• Her favorite sports are soccer and cheerleading
• She is a loyal Iowa Hawkeye fan!
• She works at her own pace
• She is smart and good at school
• Her favorite things to do are cheer, make up dances, sing, be goofy, play on Webkinz, and watch movies.
• She knows what her sister wants before I can even figure it out.
• She loves animals and has a special place in her heart for all of her pets
• She is always on the GO!
• Her favorite food is crab legs
• Her favorite drink.....because mom rarely lets her have it....is Mt. Dew.
• She is a worrier, but likes to take risks all the same.
• She prefers to play at home.
• She is great at imitating scenes from movies
• She is super funny
• Her favorite color is green
• She is 9 going on 16
• She makes me smile

I love her

My Birthday Party - by Halle

Hi my name is Halle and I am Landri's sister.My birthday is January 16 i tearnd 9 years old my mom tells me to stop growing and stop getting smarter than her. We all thought Landri was going to be born in January and she was supposed to be born on my birthday but she was born 2 months early she was born on November26 instead of January16.

She came with us and my birthday was at Grandharbor water park I got to invite 5 people counting me 6 there is a really big water park we spent the night there for 1 night .I brought Macey, Jilliann, Chloe,zoey and another Chloe.for my birthday and what I got from Macey is make up a whole bag of it. from Jilliann I got a catapilller webkinz and Alivin and the Chipmunks the Squeakles cd from Chloe I got UNO sparkel and from the other Chloe I got dot'zas and Zoey did not spend the night cause she had a cheer compation and so she did not have time to get me a present. At the water park there are 3 slides. 2 were body slides where you do not need a tube and the other 1 you need a tube.  The one that you need a tube goes outside. It is a tunnel tube though so it is not cold and the other 2 slides are not tunnels.

It was really fun I am glad all my friends could go. Thanks mom for letting me go. It was in Dubuque if you want to go google Grandharbor water park.

There was this scabenger hunt and if you found all the peices you got to make your own reindeer and keep it and they would also give you 2 free tokens for this really big arcade.  There is this Deal or No Deal game and I won 400 tickets only on 1 turn and there is this chair you can sit in and it buzzes.

Landri's Listening update! 7 weeks of hearing!

Things have been so hectic lately that I haven't had a chance to get updates on the blog about Landri's progress and reactions since her sound was turned on.  I have so much to share!  Whew!  What a rollercoaster this journey has already been!  Up and down, up and down!! Since Landri's activation 7 weeks ago we have been back to the University of Iowa 4 times for MAPing appointments, electrophysiology, speech, and an appointment with her surgeon about a game plan for finishing the implant surgery on her right ear.  Sprinkle in a blood draw for genetic testing on her heart condition that took 15 years off of my life, interviewing private speech therapists, jumping thru insurance hoops, concentrating on pumping in the language Landri needs daily, creating good listening environments, trying to evaluate what sounds we feel Landri responds to, understands and replicates and I think that the next appointment needs to be for a psychiatrist for ME! :-)  Thank goodness I have other rockstar CI mommies as role models that work full time, have older children with a 1001 activities, are fabulous advocates for their children and get it all done while remaining sane.


The highlights!!!

• CI appointments and MAPings - Landri has received 18 MAPs..I think....since she was first activated.  Each one is gradually louder.  She had one set of 8 that she really struggled with and pulled her CI off every second.....every half a second......much like right after she received her processor  It really was a challenge and a battle of the wills.  But, we worked thru it and in her most recent appointment they sent us home with only 2 maps!  One loud and one soft for different listening environments.  I am thrilled to say that Landri loves her latest map!  We turn the volume down a bit in the morning and after naps, but have her up to her optimal volume within 45 minutes.....so much easier!  A huge thanks to her Audis at the University of Iowa for this great map!  At her next appointment in 3 weeks they will put Landri in the sound booth for the first time since her activation to hopefully get an audiogram out of her which will give us a better indication of what she is really hearing.  I can't wait!
• New sound moments for Landri - Landri's two favorite sounds are "ahhhh" and "mmmmm".  Everyday is soooo different. Some days she only says "ahhhhhh" all day....like to the point that she is hoarse at night and I wonder if she is every listening to me.  Other days it is all "mmmmm" and other days she is sooooo quiet I keep checking to make sure her CI is on and working.  At first all the drastic changes from day to day concerned me, but when I step back and think about it she has never heard her own voice before. How strange would that be?  No wonder she wants to hear it all the time.  And just like a typical one year old it becomes old news at some point and then the other sounds she is hearing become exciting and those are likely her listening days when she is so quiet.  Her TOD was at the house the other night for her therapy session and found that Landri consistently dances when music is played and then just listens when it is speech so we know that she is hearing!  We also have started testing Landri with the 6 Ling Sounds that represent different sounds across the speech banana on the audiogram.  Landri responds to all of them with no visual cues.  What we are waiting for is for her to turn to her name.  We have never seen her do this and we must use her name about 1000 times a day to reinforce it. I am anxiously awaiting this moment!!  We do see Landri react to many environmental sounds and I love to see those moments when I can tell something new has clicked for her.  I still struggle to try to assess her receptive language, but I need to remind myself....she has only heard sound for 7 weeks!!  Crazy!!
• Landri's Therapy and resources - As a parent of a deaf child you have many decisions to make - hearing aides vs. cochlear implants, bilateral or unilateral, simultaneous or sequential implants, brand choice, surgeon selection, age of surgery, etc.  Honestly the decisions never end nor do the opportunities....responsibility....to advocate for your child.  One of the decisions that needs to be made is a communication method.  After much research we chose an Auditory Verbal approach for Landri.  This means that our goal for Landri is to be completely oral and mainstreamed in our neighborhood school by Kindergarten.  We want to challenge her to listen and speak and develop her auditory nerve and listening skills.  We have chosen to pur our time, energy, and a bit of faith in this approach vs. teaching Landri sign language.  Unfortunately our state has not one licensed AV Therapist....not one.  Any AVTs out there looking to make a real difference in the lives of deaf children and make many moms smile and sleep easier at night....please move to Iowa!  :-)  Since Landri was diagnosed as profoundly deaf we have been very blessed to receive a Teacher of the Deaf for her 30 minutes a week.  Since Landri was activated we held a new meeting and were fortunate to increase her TOD services to 45 minutes a week and also add an SLP to her team for 30 minutes two times a month.   The U of I recommends private speech services in addition to the ones provided to us thru the state.  Since we have chosen an AV approach for Landri we have researched extensively a new way of doing therapy.  Some well respected therapists and Oral schools across the country are now offering distance learning programs via SKYPE and other web based services.  This is a new approach developed by therapists that love our kids and realize the children that don't live in a community with an Oral Deaf school also deserve to have the resources available to learn to listen and speak.  We have visited with 4 programs that offer this service and hope to have a decision made this week. We are also in the process of jumping thru insurance hoops to see if we can get some of Landri's private speech services covered.  Distance Learning programs are so new that we have some convincing to do with BC/BS.
• Finishing Landri's right ear - After much research once we determined Landri was a cochlear implant candidate we made the decision that we wanted Landri to be bilateral...have CIs in both ears.  Studies have shown that these kids do better in noisy environments and in localizing sound.  Since Landri's first surgery could not be completed due to fluid in her ear we still need to have this ear completed.  We saw her surgeon at the beginning of the month and he said that her ear looks GOOD and that he would like to complete the surgery in the Spring.  Yeah!!!
• Landri's heart condition - In Landri's last CI surgery they found that she has a heart condition called Long QT disorder.  It involves her electrical system and how her heart beats.  Within hours of that surgery they started her on medication to slow down her heart rate. She has been on this medication 3 times a day ever since.  She has had another EKG to confirm the condition.  The disorder is genetic and we need to figure out which strain of the disorder she has to determine best how to treat her as she grows.  We are awaiting the results of genetic testing.  It is a miracle when you think of it. Because of her we found out that I have the same heart condition as well.  Thank God Halle does not. 

Information overload!  This is just a snippit of all that has happened.  It is so hard to include every single thing!  To anyone that is still reading this crazy long post I wanted to share a cute story about Landri.  She found her belly button the other day.  She kept pointing at it...then she would point at her nose...then to me.  She did these three steps over and over again.  I am for sure she was saying " Look Mom! I found a nose growing out of my tummy!"  :-)  We also got to see her CI buddy Evan this weekend when we met in Des Moines. I can't wait to watch them grow together in their new world of sound.  Miracles do happen. Blessings to all!